New here and need a little help please

[helpneededx2]

I have entered this site as the result of a search on how to help my love of three years. He never had agoraphobia before his child died five years ago. She had cerebral palsy and he was the primary caregiver. Now, it is a stretch for him to spend the night away from home. We just came back from a trip to the beach that was supposed to be two nights/three days and he made it for one night. He is embarressed to the point that he won't always tell me the truth. I try to understand and be understanding but I really don't know the details as all of this happened in his life before I knew him. He is finally coming clean about why we don't go out of town and now, I need to know how to be supportive. Please....any help. He is a great guy and I really would love to be able to help if I can. Any ideas, suggestions, insight?

Thank you so much. - jt

[merc]

When you are the primary caregiver for an ill child it takes a tremendous toll. My daughter had a rough few years with 5 major surgeries in two years with each surgery she would regress and have to learn how to walk again. I didn't have much family support from anyone not even my husband. I eventually broke and although I'm technically o.k. I'm still not back to where I was and may never be. After she was born, I was afraid to let anyone else babysit for her. It was such a hassle to go anywhere with three kids age 5 and under. I mean I really see, see how unfair and cruel just living can be. I've seen kids with way worse disabilities than my child.

I often felt guilty about felling bad because my child's disabilities aren't effecting her life as much. She doesn't need braces. She only has three elements of VATER syndrome some kids and parents deal with all five.

I think he needs counseling. I've had an occasional episode of PTSD. One was I was watching this medical drama story of a little girl from somewhere in the middle east. She had an olive complexion but really resembled my daughter otherwise. They had the pre-surgery unit scenes where you wait for them to take your child into the or. It was too much for me I swear I could smell the place and remembered everything from the surgical nurse pacing. The small sink, that was dripping.

My daughter also had some stress triggers. She hated fakey "friendly" types that speak so sweetly and do horrible things to you, such as stick your IV in. Anyone in a uniform would cause her to scream. At pre-school a dental hygienist came in to talk about teeth. She was wearing a nurse like uniform and my kid avoided her and stuck to the back and refused to go get a toothbrush and the teachers didn't push it.

I don't know what the care with cerebal palsy is at all but some of the things I had to do for my child were very hard. If he never dealt with feeling like the worst parent in the world. Guilt for having a child with a birth defect. He may need to talk to someone. I would push all the frustration and sadness and grief somewhere else to just get through the day and wake up to do it all over again. Sorry even on here I don't share too much about this period of my life.

[Chantellabella]

Hi and welcome to the forum. Have you been able to talk to him about it?

[Skippy]

Welcome to the forum.